gertie

Thanks for taking time to reply. On the rare good day, you're right things are not as bad.

Again, I do not know how to describe these feelings. It involves odors. I do have migraines, partial seizures, cfs, & mcs, and am trying to figure out what is the root of my problem. Does Dysautonomia just get worse & worse? As I have gotten older everything is worse. If I walk into a rest room where someone has washed their hands, even if the soap is mild, I automatically get weak, dizzy & feel like I am going to pass out. I went out yesterday for first time in weeks. My DH drove me to Walmart & I didn't get in the door until I started that same old dizzy, lifeless feeling. I came home & collapsed for hours & today I am still drained. Do any of you experience this? I'm so sick of staying home & avoiding life. Even my pets odor makes me ill. thanks for help.

Thanks for reply. When mine first started it seemed it was always in the night but as I've gotten older it hits anytime. Sounds like same symptoms you have except I get nausea & I usually end up in bathroom. I've tried walking it off, but as you say my legs start getting numb & weak so I usually get close to a BR & sit with my head down hoping I won't pass out.

The accu pressure wrist bands did not help my nausea/motion sickness & I had a bad reaction to McClezine, hopefully you want. What does seem to help is Ativan taken about an hour before you get in vehicle. Benadryl seems to help others in my family. I hope you enjoy your vacation.

I have IBS and when colon cramps are bad I also have syncope. I have times I can eat without a problem but then have bouts where everything I eat seems to trigger colon spasms. I don't have diarrhea just hard spasms. I feel stress & anxiety makes these episodes worse. Does anyone else have these symptoms? Thanks.

Does anyone here know a good MCAD forum? thanks.

The only place I can come for understanding. It's a blessing!

I've tried the brown rice & also the quinoa & corn blend pasta which isn't bad. I found that most of the gluten free bread I bought really wasn't gluten free. I started making my own bread using the grains & nuts I could tolerate. My fav was made from almond meal & ground flax. I found crackers were also easy to make & delicious. After going gluten free for few weeks & could not tell I felt any better I went back to wheat.

My internist tells me that people with Gerd or heartburn don't have enough stomach acid. He has his patients with Gerd do a test called Betaine HCL test to determine if that is their problem. I'm supposed to do this test before seeing dr again. Have you done this test? I've never found anything that helped symptoms once HB started. Most things such as ACV made me worse. Hope you're much better by now.

blue, how did the dental apt go? I get the white coat syndrome just thinking about going to a dr or dentist. When I have a migraine it takes a couple of days for things to calm down. I'm not exactly sure what happens to our blood vessels/arteries when we have a migraine, but I know they do constrict then dilate so that could be a factor. Hope you're feeling better!

You say it's in your head but could it be your ears? I have that occasionally when I have fluid in my ear. I have tinnitus 24/7 in both ears but the swishing I hear is more like my heartbeat. Is your blood pressure ok?

Thanks everyone for your help. I've been on low histamine diet for a long time. There are very few foods that I do not react to so my diet is limited. Occ I can eat a bite or two of a food that I am allergic to without a problem. It's not only food but I seem to be sensitive to everything, that's why I am so surprised I made it through the dr's office & hospital lab & did not have one reaction to anything.

Thanks Bigskyfam, my husband is an on the go guy also & I'm glad he is. If he was like me I couldn't take it. A trip to the grocery store is a big days work for me & it has to be a spur of the moment thing when I think I can get through it. I don't think they will ever understand. I hope I finally get to the point of not trying to please everyone else. Do what you enjoy!

I also asked for a histamine level test but my internist said their office didn't do that test. I'm limited in what I can have done since no doc in my area. thanks for reply.

Thanks for your reply. I think I understand how you feel. My grown son & family came in for for couple of hours on Mothers day & altho I enjoyed them I was so exhausted by the time they left I was physically ill . No one seems to understand that kind of fatigue especially my DH. Sometimes I think I can go out for awhile but before I actually get there I have to come back home. That is especially embarrassing for me, it makes me look & feel like a weak person. I'm hoping you get where you can take those college courses. Don't give up!

I probably shouldn't feel this way but I just don't have a life. I mean I never seem to get to do anything I really want to do. My DH plans every day. He tells me the day before that tomorrow he will take me shopping. Well, it's here & I have a migraine & don't feel lifting my head much less riding & shopping. That has ruined his day. A few days ago I had a little energy & thought I would like do something, he already had plans that day, so I stayed home. I feel I have so many health problems now I shouldn't try going for long distances by myself. If I don't start going alone I'm never going to get to do anything. I can't expect DH to plan his life around how I feel. Any suggestions how to cope with this? Thanks.

Thanks Gemma, I have given up trying to take antihistamines. The partial seizures they trigger are worse than the other symptoms. I will speak to my doctor about a slip to use for blood test when having a flare. There is usually not a day that goes by I don't have a flare from something, that is unless I am having a tryptase test that day. LOL!

Chaos, I've tried taking antihistamines but I had partial seizure from them so I've given up. When the tryptase test comes back normal my internist will just assume everything is ok & that will be the end of that. I wish there was some way you could get an accurate test without a bad reaction. I almost laugh when I think that I felt the best I have felt in a few weeks & now that the test is over I will be reactive to everything again.

Thanks for your replies. I felt I should at least try to find out if I have MCAD. My internist was willing to do the test but I don't think he had ever heard of it until I mentioned it. He had to look it up before knowing what test to have done. I'm sure it was a waste of my time & money. That is as far as I will ever get in finding out if I might have it. When I was going to the hospital ER with reactions to meds & foods was years before I ever heard of MCAD & I'm sad to say things haven't changed much here.

I have suspected for a long time I might have MCAD since I am allergic to everything. I had an appointment to have blood drawn today for a serum tryptase test. I usually react to everything & everyone I come in contact with + everything I eat. I found it strange that today nothing bothered me. I didn't itch, burn, freeze, throat & mouth burn, didn't feel faint. I was almost tempted to take an aspirin so I would be having an allergic reaction to something when I had the test done. I know that's silly, but I'm sure the test will be normal because I felt fine other than a little balance problem. Did any of your tests come back normal even tho you have MCAD? Thanks.

I have a lot of visual disturbance sometimes from Meniere's, other times from Dysautonomia & migraines. It's impossible to drive when the road seems to be undulating & swaying or your vision is fuzzy. Nothing has ever been found wrong during vision checkups.

Mine has been caused by Meniere's disease.

I've been off probiotic for 2 days now & just beginning to feel a little better. Thanks everybody!

Thanks everyone. This probiotic is the only one I could find that only used rice starch as a filler. I will not take it for a few days & see how I feel. It really gets disgusting not being able to tolerate anything.

Most of my allergy symptoms involve my neurological system in some way. I guess that's why I hesitate taking new things. I finally found a probiotic (allergen free) & thought that would be good for my IBS. I've been taking a small amount of this for a few days & have had no bloating or anything I've heard that is common when starting probiotics. Instead, I've been having some strange problems with my vision & I've been lethargic & depressed the last couple of days. I slept for 3 hours this afternoon & still didn't want to get up which is not me at all. Is it possible a probiotic would cause this. I have had strange symptoms like this from antigen injections for mold before & had to stop taking them. Your comments appreciated.